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the end.

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I just wanted to wrap up this blog and report that I am nearly completely free from the saga of the last two years. Illness has taken me down many different roads- mentally, emotionally, physically, and spiritually- and has been the biggest challenge in my life so far. It has made me who I am today.

During the time that I was very sick, I felt- most of the time- that things were never going to be okay again. I am generally a really positive person, but I actually began to believe I was cursed. Doomed. But finally, after 18 months, things DID change.

That’s the main thing I want you to know, if you are reading this from the depths of your own struggle with illness (physical or mental). Things can get better. I want to leave this blog up and running as a testament to the struggle of the last 2 years and, equally importantly, as a testament to HOPE (which is not a feeling or a decision but is the very real, undeniable fact that change is ALWAYS possible).

My world is becoming full now, after a long stagnant, frustrating, and lonely time period. Life is opening up again! Amazing.

So for the record, I was diagnosed with: Chronic Active Epstein-Barr Virus, M.E./Chronic Fatigue Syndrome, & a rare auto-immune disorder in my B-cells. And, after two years (including being homebound, on bed rest, living dependently and independently), I am basically FULLY RECOVERED.

If you are dealing with a chronic illness and feeling hopeless, please contact me. I care a lot about what you are going through.

Comment with any questions or send me an e-mail.

G-r-a-t-e-f-u-l-l-y His ❤ ❤ ❤

2 thoughts on “the end.

  1. It sounds too good to be true that you are well. I would like to understand more of what you found out. My daughter has been ill for 21 months with caebv, it attacked her bone marrow and she has a poor prognosis, every doctor she has seen has said there is nothing they can do. This is so hard to deal with.

    • Angela,

      I am so sorry to hear this. I am sure you are feeling helpless, frustrated, and devastated at what your daughter is facing.

      I don’t know how much I can offer medically, but I know that my bone marrow biopsy was EBV-negative. I remember hearing multiple times that if it is in the bone marrow there is a different protocol. Have you contacted the National Institute of Health in Bethesda, MD? I was seen there by doctors who specialize in CAEBV. The doctor in charge was Dr. Jeffrey Cohen. They do have treatment options, but whether or not the risks outweigh the possible rewards is the question they will try to walk you through. Because our bodies and situations are so different, I can’t advise you in much of this. For my situation, the treatments they were considering (I believe Rituximab and one other one) were too dangerous, especially considering I was not getting worse and the virus was not at an excessively high level. What they suggested, for me, was a long period of bed rest followed by graded exercise therapy. Anyway, I don’t know about your daughter, but I would suggest getting in touch with Dr Cohen at the NIH. You may need one of your daughter’s physicians to make a referral, but it is a government hospital so all of the expenses would be covered (except, of course, travel). My heart goes out to you and your daughter… I will pray for her full and speedy recovery. I hope that things become clear soon and that you both can stay hopeful.

      http://www.niaid.nih.gov/labsandresources/labs/aboutlabs/lid/medicalvirologysection/Pages/cohen.aspx

      This is the Dr I saw. He specializes in CAEBV.

      Thank you for reaching out and sharing your struggle. My prayers and thoughts are with you and your family tonight. Let me know if you have any more questions.

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